Autistic children denied hope due to being five

The Toronto Star by Janet McLaughlin and Willem van Heiningen 7 April 2016

Imagine that your child cannot look you in the eye, wave hello, or tell you he loves you. He has difficulty sleeping and often wakes in the night crying, but can’t tell you why. When he is sick or in pain, he can’t describe what hurts. He gets upset at seemingly random changes in his environment, sometimes to the point of sobbing uncontrollably, but can’t express the reason. You love him beyond words, yet you feel helpless.

As his peers learn to talk, feed and dress themselves, your growing son remains unable to meet his most basic needs. When other kids ask him his name, he looks away. They accuse him of being rude or stupid. You know your child is intelligent, that he desires love, affection and friends. Yet he is trapped inside a brain that won’t let him make sense of his environment.

You are told that Intensive Behavioural Intervention (IBI) is the only proven therapy able to give your child hope of fulfilling his potential. IBI can help him learn to communicate, socialize, and relate to others. If he receives it, he has a better chance of succeeding in school and one day living an independent life. You are told IBI costs over $50,000 a year, and that the sooner it starts, the better chance it has of being effective. Your government funds this service, but you must wait your turn. In order to even get on the waiting list, you first need an autism diagnosis. As some doctors feel uncomfortable providing an early diagnosis, you pay over $2,000 to a specially trained psychologist to tell you what you already know, and secure your spot as soon as possible.

You wait patiently for nearly three years and are thrilled to finally be told you’re next in line. Your child is nearly five now, still in diapers, barely talking, but there is hope. You are so excited to see the difference this long awaited therapy can make in your child’s life, releasing his untapped potential.

Then, you wake up one morning to headlines that the government has made ambitious new investments in autism therapy to benefit all children with autism throughout the province, except those unlucky enough to have already waited years in line for their turn. How can this possibly be true?

Yet it is. This is our family’s story, and that of thousands of other Ontario families like ours who have children with autism. We’ve been devastated by the Ontario government’s announcement last week that it would be cutting off IBI services for children five and older because the therapy we’ve waited for is apparently more effective for younger children. Shockingly, the government is touting its plan to reduce IBI wait times for younger kids by kicking older ones off the list.

We are happy for the autistic children of the future, pleased they will receive faster and earlier the funding our government failed to provide to us. But making these changes at the expense of an entire cohort of autistic children, denying them the support they need to receive the most widely accepted intervention available, is unconscionable. Many studies indicate that IBI remains most effective until at least the age of six and is still quite beneficial after that. Our children must not be punished, their futures compromised, for the government’s failure to fund their interventions earlier.

If the government must impose an age limit for IBI, it should be gradually transitioned in for future cohorts, giving all children who have been waiting the chance to receive their therapy without any further delay.

Given the length of wait for diagnosis and treatment, this is only fair. Otherwise, we are denying this group of children their best shot at a bright future simply because their birthday fell in the wrong year.

Janet McLaughlin is an Assistant Professor of Health Studies at Wilfrid Laurier University in Brantford, Ontario and Willem van Heiningen is a Family Physician in Wellesley, Ontario. They have a son with autism.